Hi all. After a pain free day yesterday but slightly achy, to today with no aches, pains brain fog, headache. I've got my appetite back. Feeling as good as I've felt in years. The question for me is why????
If I get a flare it's normally back on pred 20mg for 2 weeks then back to HC after that. 60mgMR morphine twice a day. 16 hours sleep a day. This time the flare started Thursday night just after I'd got over a severe toxic reaction to methotrexate which I can never have again. Have had to have lft fbc and u&e blood tests. Last week my lft was bad. So I was told that's it. No methotrexate. Not too worried coz I've had azathioprine in the past and after starting to take it for UC in 2001 never had a single flare since. In fact a recent colonoscopy could reveal no evidence that I'd ever even had UC. had lft fbc and u&e again this week all back to normal so no long term damage done. I've been on pred for 18 years at 20mg a day. Avoided osteoporosis by using a lot of supplements and doing a lot of weight bearing exercise. Taken off pred put onto HC at 30 mg. (now down to 20mg) and this disease reared its ugly head for he first time about 5 weeks after the changeover. I thought it was flu but it just got worse and worse. In the end the only way to get better was to take a 100 mg HC dose early one morning followed by my daily dose. By the afternoon I felt fine. So I assume that pred had been covering up another inflammatory disease. I'd already had UC and RA and OA so I'm obviously prone to auto immune diseases. I think my immune system gets bored coz everywhere is so clean nowadays it's got nothing to do. So it practices on me.
Back to the main plot.
This time the flare really started in earnest on Friday afternoon and on Sunday I felt dreadful. Went to bed and had the best nights sleep in months. Woke up. Flare gone. Why? Is it "what might have been if I could have tolerated methotrexate,"but I don't think so. I was so sick I must have got rid of half of them. The only thing I've noticed is a painful ache in my kidneys. This coincides with a drop in aches and pains about 20 minutes later. Every time. Could it be that my adrenals are starting to come back to life? After a year on HC and not having cortisol in my blood 24 hours a day, have they been "kickstarted" when I need extra cortisol. If they have started up, I know it'll take another 2 poss 3 years for gem to be functioning fully. A year ago if you'd have lowered my HC dose to 20mg I would have flared immediately. I've got a vortisol curve test on Friday
First blood test 9:00am
Take morning dose 15mg HC
Second blood test 10 am
Then home till about 2:30.
Back to hospital for 3rd blood test before I take afternoon dose. I would suppose, given it's short half life, that if any cortisol found in the 9:00 blood test will not be from tablets but from my own adrenal cortex. I will jump for joy coz after 18 years on pred you don't expect your adrenals to come back to life.
I'm just hoping that this isn't a false dawn
Please please let it be true.
All I can do is hope. But then that's all any of us can do.
I hope all of you out there are in as good as possible health and if I find anything out I shall share the good/bad news with you all
If you look at the pic at the top it's how I'm feeling tonight!!
Do you just get forgotten about
How to pace myself? Getting better?
Please say help gets better
Things just get worse
Things just get harder!!
